‘Invisible’ Patient Activists are Whipping Up Media Attention – What Next?

In the past week, grassroots ME/CFS patient projects to boost awareness of the serious need for biomedical research funding really started to gain traction. And though many argue it’s premature, messages about XMRV have been the driving theme. For example:

On November 29, Rivka, a low-budget publicity genius, launched “Protecting the Nation’s Blood Supply. Not!” – a campaign that spurred large numbers of patients to e-mail the American Red Cross, using a ‘playful’ video that asked what the organization was doing to keep XMRV out of the blood supply.

Just 4 days later on Friday, Dec 3, the Red Cross issued a press release stating it is banning ME/CFS patient blood donations.

And within hours, premier press coverage followed in the Wall Street Journal, Washington Post, and financial/business news website Bloomberg.com. For links to all the stories & hundreds of comments, see “Rivka’s Red Cross XMRV e-Mail & Video Campaign Scores a Win!”

On Monday, Dec 6, the ME/CFS Worldwide Patient Alliance's half-page ‘Virus’ ad ran in the Washington Post. The ad – “New HIV-like Virus in the Blood Supply” – represents weeks of work by MCWPA volunteers (http://mcwpa.org).

See Washington Post Publishes ME/CFS Virus Ad” for more information about the project, and to learn how you can help increase its impact.

But There’s Much More

For example, on her CFS Untied blog (http://cfsuntied.com/blog2), Kaley Kastle just started a list of advocacy activities currently under way. See “Patient Advocacy – What you can do.”

Within hours more than 20 people had added links to, or suggestions for, other opportunities for involvement.

And for patient activists outside the US, the Worldwide version of the XMRV Awareness Campaign is highlighted in the Youtube video "XMRV (The Retrovirus)" comparing XMRV to HIV and highlighting the potential threat of its spreading via the blood supply.

Referring to the situation in the UK, the video states: "The CFS Community is requesting the Health Minister to provide a blood test for XMRV retrovirus. The Ministry of Health is not responding."

Speaking to activists in the UK and around the world, the video offers: "If you want to sign a petition to request free XMRV testing and awareness public campaign of XMRV related diseases you can do it here":

World Widewww.PetitionOnline.com/go1315/petition.html

For Spainwww.petitiononline.com/XMRV/ptition.html

For The Netherlandswww.petities.nl/petitie/erkenning-van-en-biomedisch-onderzoek-naar-neuro-immuun-ziekten

So the ripples spread.

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4 thoughts on “‘Invisible’ Patient Activists are Whipping Up Media Attention – What Next?”

  1. arabella1776 says:

    You said: “Just 4 days later on Friday, Dec 3, the Red Cross issued a press release stating it is banning ME/CFS patient blood donations. ”

    The Red Cross stated that it made this decision to ban ME/CFS patient blood donations last October. How could Rivka’s activities in December have had any effect on its decision?

  2. Danielle says:

    The Red Cross action was actually started by another patient. It started way before Rivka did any of this.

  3. aidanwalsh says:

    even now they are reporting all xmrv with low cd-8 counts in spain…dr.paul cheney mentioned that 20 years ago…nothing new just more xmrv hype…a lot of people will be gettiing very down when the real truth comes out…let’s hope the ncf’s gail kansky will stop all the hype…you will notice that her name will not be found with all the xmrv hype…she knows better and has gone a lot further in some serious replicated pure science…

  4. oerganix says:

    ME/CFS patients, doctors and especially doctors who ARE patients themselves have said it was probably a virus that causes ME/CFS for decades. More than a year ago, WPI gave us very good evidence that the retrovirus XMRV, and later, the family of MuLVs it belongs to, is so closely associated with the disease that any honest, curious scientist would want to find out how and why.

    Instead, politics-as-usual sprang into action with the psych cabal, including the CDC, churning out negative “research” right and left, with no “pure science” to be had. Delay and sabotage has been their mantra for decades and they somehow thought they could get away with it one more time.

    Instead of turning the other gluteus maximus and saying kick me again, the patient population is now playing politics, too. America and the rest of the world pretty much said “Ho Hum” when they received the information that gave ME/CFS patients hope and inspiration. The only logical thing to do after that deafening silence is to enlighten the public to their own risk. The most obvious risk to the “public” is the contaminated blood supply. The public deserves to know what it should have been told decades ago.

    Media attention to the illness is long overdue. I commend those patient activists who spend what little energy, money and health they have trying to get medical and economic justice for those who have suffered mostly in silence for so very, very long.

    What Next? IS the big question. Will the powers that have held ME/CFS patients hostage prevail again or will there be a new era of truth, honesty and justice?

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